Suffering and Moral Distress

Ethicists and nurses have written entire books about the moral distress experienced by the bedside care provider. Thankfully, we at UVA have some of the world’s foremost experts in addressing moral distress in our backyard. Before tackling the weighty topic of moral distress, we will discuss suffering. First, a brief discussion on the word; “futility.”

Ethicists have argued that claims of patient suffering have become more commonplace in medicine despite a lack of consistent meaning. First, what is suffering, and is there a definition? Eric Cassell, a philosopher, ethicist, and physician, offers the following: suffering is a subjective experience (someone has to experience it), and the nature of suffering is such that it threatens the intactness of the person. Dr. Cassell's definition separates pain and suffering into two distinct concepts. For example, because someone experiences physical pain, it does not always follow that they will suffer.

You might already see a problem with the definition offered by Dr. Cassell…the idea of intactness. Babies do not possess the ability to question their intactness, but I firmly believe they can suffer. So, instead of pain that threatens a baby's intactness, who cannot rationalize what that means, we'll define suffering as a subjective experience that goes beyond the feeling of pain.

Put simply; we cannot directly ask a baby if they are suffering and thus rely on objective surrogates. For example, we often observe behaviors we associate with pain and distress, such as agitation, crying, and furrowing of the brow. If the behaviors mentioned earlier indicate pain and, perhaps, suffering, does their absence suggest that the baby is not suffering? No, not necessarily.

Notably, it is crucial to acknowledge the present definition of suffering for the patient, but also take into account the possibility for future suffering. Interestingly, the concept of future suffering is more often invoked when discussing limiting life-saving/prolonging interventions when compared to the patients current state of perceived suffering. The Groningen protocol from the Netherlands is one attempt at the operationalization of a protocol that allows for the termination of life of a newborn that is not terminally ill but, per the parents and doctors, would be subject to unbearable suffering should they live. A paper discussing the Groningen protocol is attached.

Critics of the Groningen protocol point out that predictions of future suffering are often dubious at best. There is a substantial body of evidence that demonstrates that children living with disability have a vastly different experience than we would predict. In this sense, critics of the Groningen protocol assert that its use justifies the killing of babies who, while they may experience suffering, may not experience to the degree that would justify non-existence.

The problem with the word suffering is that it carries excess baggage with it, as does futility. Suffering, as a word, can sweep providers into a gestalt that prompts them to consider only one alternative, death withdrawal of life-sustaining measures. The word suffering is wielded by those who speak it, unknowingly I imagine, to convey a quality of life not worth living. Personally, while reflecting on this post, I found that I've used the term in times when I, at the bedside, was suffering from continued care of the patient.

In times I've uttered the word, I probably meant, "I would not want to live this way!" What makes suffering and futility interesting as concepts, is that there is an implication of our own biases wrapped up in the utterance of the word. Often, suffering is discussed: with further clarity about what specifically concerns us at the bedside, in a manner to prompt a decision about the further plan of care, with an intent to lead to withdrawal of life sustaining measures.

To move past the use of words without clear definitions, we can ask concrete questions of ourselves, providers, and parents. A clear question such as, "What do you mean by suffering?", can go far in helping to address the specific concerns of the speaker. As providers at the bedside we have an obligation to address those concerns but we must acknowledge our own biases and experiences at the bedside of our patients.

Observing what is perceived as suffering in a child causes suffering in the observer. This occurs for many reasons, some reasons have to do with our inability to fix the underlying problem of the patient. With proper interventions for the patient to improve their experience, we can often alleviate our won suffering. Suffering that is deemed unbearable or not worth the potential benefit is a value judgement. Such judgments, and the medical decisions that follow them, ought to be left to the patients parents or surrogate decision makers. All of that is well and good but it does not eliminate our own suffering or the potential for moral distress, the next topic in this module.

What follows here are quotes, solicited from your colleagues, used to inform this module further.

“Taking care of babies with complex medical issues is challenging and rewarding, but can produce significant moral distress for the medical team. I experienced this as a primary nurse for a baby last year and had to temporarily step down from his team because I had become conflicted and upset about the direction in which care was going… My distress as a bedside nurse was watching the baby suffer and having to inflict pain when it seemed inevitable that the baby would die… What had started as my moral distress gave me the strength to stand with the family as they had to make the decision to stop further medical interventions and let the baby pass as comfortably as possible. It was an experience that has shaped me and grown me in many ways and one for which I am so grateful.”

“It is exhausting as the bedside nurse to witness the struggle of encouraging parental involvement in our chronic population week after week and then feel truly fearful when sending home a baby we have put so much time and effort into caring for with a family we don’t have complete confidence in.

“If I as a bedside caregiver know that the parent of a complicated child truly has made an informed, realistic decision about the care they want, it is much easier to care for that child. The same applies to those parents who decide not to continue support.”

Clearly, all of these providers experienced the care they provided as a moral agent differently.

All of these providers experienced the care they provided as a moral agent differently. Some experienced genuine moral distress while others experienced a moral dilemma. First, let us start with a definition of moral distress.

Moral distress refers to the anguish an individual experiences when they make an explicit moral judgment about what action he/she should take but are unable to act accordingly due to constraints placed on them. These constraints can be societal, institutional, or contextual. Existing after the distressing situation has passed, moral residue refers to the individual's lingering feelings. Moral distress and its avoidance is crucial given it leads to job dissatisfaction and contributes to staff burnout.

In the NICU, moral distress instances often arise when providers deem ongoing care provided to patients contrary to their best interest. The ICU is full of life-sustaining technology; therefore, it is not surprising that healthcare professionals in this setting often experience moral distress. While the degree of technology present is essential, the presence of an adverse ethical climate may be just as significant.

Within the literature on moral distress, three themes emerge as being most significant. First, of course, are the causes of moral distress themselves. The ongoing provision of life-prolonging therapies, for example. Second, the relationship between various healthcare providers within different settings is essential. Classically, one could think of this as physician relationships with nurses, but this is sometimes misrepresented, as we will learn shortly. The final theme is the impact of moral distress on an individual over time.

A disproportionate amount of studies that have explored moral distress have done so in the field of nursing. Nurses remain the main focus of empirical research in moral distress. Proposed reasons for this from the literature include; a sense that nurses are the frontline workers who represent the most significant part of the healthcare team and the nurse-patient relationship's intimacy.

It is unclear whether there is a distinction between medical and nursing in terms of the experience of moral distress. Solomon et al., one of my professors at Harvard, found 38% of pediatric critical care physicians and 48% of pediatric critical care nurses admitted to acting against their consciences in providing ongoing life-prolonging therapies. Trotochaud et al. found no differences between physicians and nurses regarding moral distress amongst critical care staff. Both papers are listed below for your perusal.

Recently, there has been an emphasis on the ethical climate rather than the individual aspects of moral distress. An important aspect of surveys that assess a healthcare organization's ethical climate is the degree of inclusion individuals feel when end-of-life decisions are made. Centers with low scores in the degree of involvement in treatment decisions may contribute to moral distress. A possible remedy to prevent moral distress amongst providers is increased collaboration. Notably, possible solutions must take the healthcare organization's ethical climate into account, especially the characteristics of organizational power, position, and role.

Alternatively, educational endeavors, like this curriculum, have been proposed to decrease moral distress. The results are mixed. Some are concerned that additional ethics education may lead to increased moral sensitivity, thereby increasing moral distress. On the other hand, and the idea I ascribe to, further education may empower individuals to voice their concerns in a constructive manner. Time will tell how this curriculum fares.

Our very own Dr. Epstein proposed a theoretical framework for moral distress called the crescendo effect. Essentially, the crescendo effect states that moral distress for an individual will increase with repeated exposure to distress.

The moral distress crescendo occurs during a prolonged patient stay typically associated with prolonged and aggressive treatment. As alluded to earlier, moral distress concerns about a particular patient often involve other problems within the unit as a whole such as impaired communication or unclear institutional policies. Above, we briefly described moral residue; here, we will address it further.

Once the distressing situation has passed, the acute moral distress of the provider decreases. That being said, we can all agree that the painful feelings are still present in some form. The remnant feelings lay the groundwork for a new baseline for further moral distress. As we continue to experience distressing situations as providers, we steadily increase our baseline moral residue and create higher crescendos. The result is stronger reactions to distressing situations.

Several patterns may develop in a provider's response to moral distress. Some providers may become numb and recuse themselves from further care of morally challenging patients. This avoidance might include recusing themselves from a patient's care they already know or avoiding similar patients in the future. Providers may develop a conscientious objection pattern, which includes; consulting ethics, refusal to follow orders, or voicing their objection. A final pattern, and perhaps the most concerning, is the provider's withdrawal from their chosen field.

Thankfully, we have an experienced moral distress consult service for when distressing situations arise. Strategies to obviate moral distress include; naming moral distress, supporting networks, and addressing institutional culture's root causes. Moral distress will always be present, but naming it and addressing its root causes, while daunting, is necessary for one's career longevity and moral integrity.

References:

Salter EK. The new futility? The rhetoric and role of "suffering" in pediatric decision-making. Nurs Ethics. 2020;27(1)16-27

Prentice T, et al. Moral distress within neonatal and pediatric intensive care units: as systematic review. Arch Dis Child. 2016;101:701-708

Asgari S, et al. Relationship between moral distress and ethical climate with job satisfaction in nurses. Nurs Ethics. 2019;26(2)346-356

Epstein EG, Hamric AB. Moral distress, moral residue, and the crescendo effect. The Journal of Clinical Ethics. 2009;20(4)

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Suffering and Moral Distress

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